Help! I'm new and have a terrible RD!

[Guest guest]

Hello Sophia and everyone else -

Thank you all for your e-mail and prayers.

I have just arrived home from my RD appointment -

where he told me once again - he doesn't know what

this is, but we can try some different drugs, but oops -

some of the drugs aren't necessarily approved with

pregnancy, but we can try anyway!!!!

I'd rather be in pain than risk any harm to my baby!

I'm not sure what he is thinking, or if he is at all!

He said it sort of looks like RA, but I really don't fit

the textbook definition of that, but it must be some sort

of RA. I asked him about Stills and he said that since

I wasn't getting the high fevers with my rash that it wasn't

Stills. I told him I had read of other people on this site

who also didn't have the high fevers, but did have the

rash as I did and were diagnosed with Stills, but he discounted

that.

What frustrated me was that he was willing to say it was

RA - even though it didn't fit that textbook definition, but

he wouldn't consider Stills when it didn't in his mind fit

the typical Stills profile!!!!! I think he just doesn't know

enough about Stills to know! I truly believe the people

on this site do know more than the docs!

Either way - I'm no better off now than I was yesterday

and I'm still in pain!

He wants to lower my dose of Prednisone, which of course

makes me nervous since I'm still in pain now. Right now

I'm on 20 mg twice a day. I told him that I get worse at

night and he told me that the textbook patient of RA feels

worse in the mornings! Once again - I'm not fitting his

stupid textbook profiles!

I told him if I wanted to lessen the doses that I would rather

take less in the morning and more in the evening.

Which - for now - he has okayed. We're going to

take 5 mg off a week and see how I do.

Does anyone have any ideas of anything else I can

do?

Has anyone - anywhere noticed that certain foods trigger

inflammation or lessen it? At this point - since there are not many

drug options - I'm not sure what to do!

You all are such wonderful people and I'm soooooooo glad

to have found this support group!

Any help would be very, very appreciated!

Thank you!

> Hi! I feel your frustation I was diagnosed in Oct12,2003.  I

> am 34 years old and had all the same symptoms and basically same

> situations.  I have two daughters one 8 and one 6 and I recall all the

> fear and anxiety I felt during all those test no answers and more test

> and lots of pain and the horrific rash I didn't think I would make it

> and was so scared for my daughters my husband and what our lives

> would be with this disease through a lot of prayer and lots of

> different Doctors I  feel I'm finally starting to come to terms with

> it and I'm almost familiar with the ups and downs.  I have so much to

> share with you your case is so similar, however I don't know where to

> begin after so many different treatments I went through Steriods,

> Cyclosporin, Indocin and many antiflamatorys later I finally feel that

> with a possitive attitude and really focusing on all the good (I know

> it seems hard and the feelings of devastation and insecurity and doubt

> are great) but even through that try and find some sort of peace in

> your heart and know you will make it through and be fine.  I never

> thought back then I would make it a year well it has been a year I'm

> still here and wiser so I think but you have to remember that your

> brain controlles a huge part of your body and your ability to fight

> whatever is going on.  By the way I forgot to mention that I live in

> Pasadena.  I've been reading some of the mails and learned some new

> things got inspired from some people and definitely prayed for all but

> never wrote anything about me or to anyone I didn't feel confident

> enough I guess.  Everyone had so much experience and knowledge I felt

> by reading learning and praying for everyone I was actually receiving

> a great deal of peace of mind and hope.   However your case was so

> familiar I felt all the insecurity and fear that It reminded me of all

> that I've felt and gone throught with this I had to write back and try

> to give you some sort of peace of mind just to let you know you're

> not alone and even though it all seems dark and hopeless it will get

> easier and  you'll get better but remember your mind and faith are

> huge.  Congratulations on you baby and I  Pray for  you both.     God

> Bless You both,    Sophia

>